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Meetings and Gatherings >> Local Meetings and Gatherings >> Want to meet other MM'ers?
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Message started by DJ on Oct 21st, 2005 at 10:06am

Title: Want to meet other MM'ers?
Post by DJ on Oct 21st, 2005 at 10:06am
As our board grows, I wanted to have a special place for people to have the opportunity to meet.

With so many people traveling to different parts of the country for surgeries, followup appointments, etc. this board will give you the opportunity to try and meet up with others who live in the area or who will be in the area at the same time.

A perfect example of topics on this board would be families going to Stanford or Boston for surgeries/followups.

Probably the best use of this board would be to create a new topic for each notification instead of replying to this initial thread.  Does that make sense?

Let me now if you have any questions and/or problems...

-DJ

Title: Re: Want to meet other MM'ers?
Post by shirley on Nov 11th, 2005 at 6:40pm
DJ,
I think this is a great ideal,my daughter, Jeanette has MM. Her dad and I live in Zephyrhills, Fl, If you let me know what we can do were here.
                                                               Your Friend
                                                                Shirley

Title: Re: Want to meet other MM'ers?
Post by cubbie on Nov 11th, 2005 at 7:11pm
Hi Shirley

Shirley,I am not DJ, But I think you can post a lot of information on the site about the 2006 reunion.
That will give the people insights on Lake Buena Vista and surronding areas.
I lived in Clearwater for about 12 years.
It may help the people researching to find places to have the reunion. [smiley=twocents.gif]

Your MM friend
Kevin

Title: Re: Want to meet other MM'ers?
Post by davidsan on Nov 22nd, 2005 at 10:56pm
If anyone is in the Springfield,Missouri area and you need a place to stay, my door is open to you all. We have wonderful neuroligists here(Dr. Michael Luzicky). I'm not sure of the spelling of his last name, but I'm sure that if my wife would have been diagnosed properly he would have helped her.

Title: Re: Want to meet other MM'ers?
Post by melinda on Nov 28th, 2005 at 4:26pm
Any other individuals with MM located in Nebraska or nearby?
Melinda

Title: Re: Want to meet other MM'ers?
Post by grasshopper on Nov 29th, 2005 at 11:26am
davidsan-

my husband is from springfield mo as well!!! what is your name if u don't mind me asking!! it's definately good 2 know that there r great neuro's in mo bc we were actually thinking of moving back there!!!!!!

Title: Re: Want to meet other MM'ers?
Post by cherub_esomonu on Dec 25th, 2005 at 1:48pm

   I am in the UK. i hope to come to Orlando  for the reunion and see you all and of course ask questions. I PRAY i can afford. anyone in the UK with MoyaMoya I hv just been diagnosed in Aug 05

God Bless

Cherub

Title: Re: Want to meet other MM'ers?
Post by louise_and_Lydia on Dec 27th, 2005 at 7:25pm
Hi Cherub ,
In answer to your question re any MM ers in UK, if u click on the map you can see who has reg in UK...my little girl Lydia has just turned 10 and was diagnosed 2002. Has just been referred to Great Ormand Street Hospital and is being assessed for surgery. We live in wales, I would love to combine a Disney Hol with the reunion but will depend on cost etc,
ps. this is a great site for all your questions, hope all is well with you at moment

Louise(mum to Lydia) :)

Title: Re: Want to meet other MM'ers?
Post by cherub_esomonu on Dec 29th, 2005 at 8:14pm

Hello Louse and Lydia

How is Lydia doing. I was in the National Hospital next   to Great Ormond when they diagnosed Moyamoya on the 25th Aug05 I was in hosp for one month and surgery was no option for me. My treatment at present is blood transfusions every 3 to 4wks co-dydamol for the headaches and bloodpressure tablet. Blod pressure has now settled and I hv never had blood pressure problems before nor headaches. No stroke. I am actually trying to get a 2nd opnion from Dr G Steinberg. Of course this is just a dream for me as the costs will determine what next.  Yes the Puff of SMOKE IS THERE IN MY SCANS !

I do pray that I go to the reunion. Like u the costs ?
Thank you very much for replying. This email business is all new to me As I am off work since Aug I found this web site trying to find what this MM is all about. Its quite depressing if the Doctors don't know much about the illness. Actually my heamotologist (sp)  monitoring the transfusions said he has never had an adult of my age to treat all his MM patients are chilgren and teenagers.  And my GP he has never had an  MM patient I am the first. How interesting I thought for me!
pls up date as to Lydia's assessment I will be praying for her.

God Bless
Cherub
esomonu@hotmail.com        

Title: Re: Want to meet other MM'ers?
Post by hell_bytch_1 on Jan 12th, 2006 at 11:31am
Chad and I live in Maine and I will be having 2 surgeries and the follow ups in Boston. We are taking a bus too Boston and home

Title: Re: Want to meet other MM'ers?
Post by lelet on Feb 7th, 2006 at 3:52pm
Hi There!!!!

  Anyone in British Columbia with MoyaMoya??
Washington State?? Oregon?? Montana?? Alberta??

Title: Re: Want to meet other MM'ers?
Post by Maryann on Apr 6th, 2006 at 4:20pm
Anyone in the Boulder area of Colorado?  Would love to know someone with MM close by.  Our 6 year old daughter has MM and will have surgery 4/7/06 at Stanford.

MaryAnn

Title: Re: Want to meet other MM'ers?
Post by Miss.Anna on Jul 9th, 2006 at 7:52am
My name is Anna i have MM and found out about at the age of 15. I had surgry done by Dr. M. Scott in Boston

i was wonderinhg if any of you live in around PA, MD, NJ, since that is all close to me also NY

i always thought that i was the only one who had moya moya
please if some of you could email me and we can email each other i would really like to make some frinds who have moy moya

my email is

sweetbaby@entermail.net

:) :) :) :) :)

Title: Re: Want to meet other MM'ers?
Post by a_longtin on Jul 9th, 2006 at 2:19pm
hi my name is andy i was just foundout i have mm after my stroke.

Title: Re: Want to meet other MM'ers?
Post by Mar on Jul 9th, 2006 at 10:43pm
Hi Anna & Andy, [smiley=wave.gif] Welcome to our MM family!

I’m sorry to hear you have MM, but glad you found us. This is an informative and dedicated website, with a wonderful group of people who have been down that same rough road you have, one way or the other. So feel free to post and ask any questions you may have and get to know us. I think you’ll find it comforting and you’ll meet some good people and learn in the process.

Anna, I live pretty close to you, right outside the Philly. I personally do not have MM, my niece does, but I would be happy to talk to you anytime, as would anyone else here who thought they might be of some help to you.

Andy, I hope and pray that your stroke wasn’t that debilitating, and that you’re learning all you can about this rare disease, so it will help you make good informative decisions that’s best for your particular case. That’s so important. MM is a progressive disease and needs the attention from moyamoya experienced doctors who have had MMD background and know the risks involved and the best path to take to manage this rare disease.

Again, feel free to ask any questions. No question is too small. You both are in my thoughts and prayers.

Mar

Title: Re: Want to meet other MM'ers?
Post by Taly on Feb 2nd, 2009 at 12:13pm
I live in Oklahoma and was looking for anyone with Moyamoya close to here I can talk to. I dont have MM but my son does. My email address is Talybama@yahoo.com.

Thanks
Taly

Title: Re: Want to meet other MM'ers?
Post by Ashleigh on Feb 10th, 2009 at 12:10pm
Hi there, my Christmas Present was to be told I have MM and would like to know if there is anyone in Johannesburg or for that matter in South Africa who has MM.
Its nice to know that my family and I are not alone in this!

Have a good day you all!
ASHLEIGH

Title: Re: Want to meet other MM'ers?
Post by Michele on Feb 11th, 2009 at 10:11pm
There was discussion of a members map at one point, that would be so GREAT!

Title: Re: Want to meet other MM'ers?
Post by 21widmoya on Jul 9th, 2009 at 4:59am
hey everyone i am from  WOLLONGONG IN NSW AUSTRALIA!....
just wondering if there are any locals with moyamoya, i am seing dr stoodly in sydney hospital for my fdirst app in 2 weeks to have my angiogram done................. anty info about surgery or after problems realy welcome thanks ..
IF YOU COULD WRITE A LIL BIT OF HISTORY TO SHOW MY NAN SO SHE COULD UNDERSTAND THE DISEASE I WOULD BE MOST GREATFUL PLZ EMAIL ME..................
jamie-leehall19@hotmail.com    
thank you lots ,...

Title: Re: Want to meet other MM'ers?
Post by RebeccaKay on Aug 7th, 2011 at 4:59pm
We live in Texas right out side of Houston. Anyone around this area????
email me ledkins@sbcglobal.net

Title: Re: Want to meet other MM'ers?
Post by Amit on Jun 9th, 2012 at 5:05pm
We are in San Diego California. Any MMers near by?  we really need some support.

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 7th, 2012 at 8:37am
Hi, my name is Robert Britton and I live in Edmond Ok just north of Oklahoma City. My 14 year old son Benjamin was diagnosed with MM this past wednesday the 3rd of Oct 2012. We are planning a follow up appointment down at OU Childrens hospital a couple weeks from now. Wednesday was really a shock and awe day, it has set in now and really we are ready to listen to any and all info to help get us through this rough period. From all I have read surgerys seem to help very much, but what I would like to know is how long have people put off the surgery? School just started in August and my son really doesnt want this to hurt his schooling, but on the other hand we dont want to wait if it is imperative to move forward asap.

Robert-

Title: Re: Want to meet other MM'ers?
Post by hrsridermom on Oct 7th, 2012 at 8:45pm
Hi Robert, my name is Donna.  My daughter Destin found out she had MM right before her Freshman year of high school.  she had never had a stroke and only had it on one side.  Being absolutely clueless we decided to have her surgery over the Christmas break. She had her surgery on Dec. 22 and went home Christmas morning.  She went right back to school. Now, having said that I am not sure we would do it again.  It is major surgery.  She managed to do just fine but she definitely was not back 100%.  Also everyone is different. I don't know how advanced your sons MM is.  I would let the experts tell you.  Maybe you can wait, maybe you can't.  I do know that if he has a stroke it may take him more time to catch up.  My daughter is in her first year of college now.  She has it on the other side and will need another surgery eventually.  It may be soon it may be years.  We just watch it and hope she doesn't have any serious issues.  She worries about putting college on hold but ypu know what, they can still finish what they started even if it's a year later.  Best wishes for your son.  I hope he's handling it well. They are stronger than you think but it does hit them in ways we might not expect.  If you want to email me with any questions about teens with MM my address is djinkster@aol.com just be sure to put Moyamoya in the subject line so I don't think you are spam...been getting a lot of that lately.

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 8th, 2012 at 10:52am
Hi Robert,

I've just been recently diagnosed too. I'm just waiting on the from m doctors. I also still need to do an angiogram. I'm sure your son is very strong, but like Donna said, it's also best for your so to take his time with his body. I know how horrible that is sometimes. I'm very impatient- and I'm just on the go all of the time. But, now that I'm learning more (thanks to Donna and this site and her daughter... plus doctors). I think we also get them in different degrees. I just had a stroke, but now I'm doing just fine. Still very scary... but there is hope. And you're right surgery seems to help alot. Best of luck and keep us updated. What are your son's symptoms? I've just started getting headaches recently... but they are not too bad. I hope for the best for you guys.

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 8th, 2012 at 11:12am
Benjamin has had (TIA's) for about 7 years usually 1 every 2 months or so. His symptoms are the left side of his body goes numb which can last for 15-20 mins then that leads into the debilitating Migraine. At this point he can barely stay up he usually requires laying down and trying to sleep and after 3-4 hours he is usually back to hisself. It doesnt seem that they are more or less frequent, it is random and usually about 6 a year, and it usually stops him cold at whatever he is doing. He has had one since school started in August so I would think between Oct to Nov timeframe the next one will occur. He is resilant and bounces back, but he wants to do whatever we need to to help fix his condition. We are scheduled(and paid) for a trip at gulf shores alabama which he is looking forward to for Thanksgiving. I know this is serious and we are prepared as possibly we can, I just wish we had known more before now.... 7 years of this pain for my son I am really ready for it to be over.

Thanks for your comments. Robert-

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 8th, 2012 at 11:32am
Our Followup appointment is now set at OU Childrens Hospital in OKC for Oct 23rd, so we get to wait until then but I will be on here everyday and reading different pages so I can learn all I possibly can in the short time before our appointment. Thanks again for the support and information that everyone is willing to share.

Robert-

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 8th, 2012 at 3:44pm
You are an amazing parent. It'  true blessing that you guys did get the answers and found this out now. Are you moving forward with the surgery? Everyone's symptoms seems to be really different. But, your son is amazing. I learned alot from this site...a nd still am continually learning. I'm keeping in touch with a few of the people in this site too. A few, I'm glad to say are close enough- if we wanted to get togheter it would be possible. Plus the doctors they've used are near enough for me to utilize. 6 a year? Why did it take so long for them to finally diagnose him? Either way... I'm so glad you guys are so much closer to a diagnosis. Feel free to contact me as well. I got in contact with Donna above and now am friends with her daughter on facebook. You can also email me at adavis0219@gmail.com. If its easier you can also facebook me. My email is kuddley_07@hotmail.com. Just email to let me know. Sometimes it helps to talk about it. :)

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 8th, 2012 at 3:51pm
Oh I just noticed that you said your follow up appointment is on the 23rd. let us know how it goes. Mine is on the 17th. I'll post everything up here once I'm done. Or I'll email you to let you know. Since we seem to be moving at about the same time frame. I also just currently went through a tia.

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 12th, 2012 at 8:02pm
We will pray that your appointment goes well, we look forward to hearing from you after that.

Robert-

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 18th, 2012 at 1:56pm
Hi Robert Thank you! I saw dr. Peter Khan yesterday briefly. Basically he had to look over my mra again. And based on what he saw... he thought that there was extreme narrowing in the right side of my brain. He said the angio gram would be the one to tell me if I need to get surgery or not. He said no hurry... but at this point I should get it soon. I'm doing an angiogram next month at the hospital. I also have schedule a follow up appointment with him as far as my results. In the mean time I'm sending all of my medical records to Dr. Steinberg in California as a second opinion. He said the angio gram had a less than 1% of causing another stroke. But, Of course I have to do it. He said there is different types of bypass surgery that I can undergo. To be honest I would suggest calling up to the stanford office for dr. Steinberg. I talked to Jill in that office. She answered so much of my questions. She also wanted me to call back if I had anymore. So here's to another step towards recovering. I hope this helped!

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 19th, 2012 at 12:42pm
Yesterday, I made a follow up at OU childrens, went ok it was a long and tiring day. We met with another Dr and she had us do more blood work, and ECHO, and an EEG which was the worst of the three when you have a hyper 14 yr old like I do. Good news was I got to meet Taly and Ethan while we were doing the blood donation portion.

While there I did get a copy of the MRI's on disk and I plan on sending it to Boston tomorrow.

I think that the Dr's I am dealing with arent as sure of themselves as the one Taly has dealt with. At least this is what they portray to me anyway.

Hopefully by Wednesday they will have conferred with each other and get back to us, in the mean time I will be talking to Boston.

Robert-

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 22nd, 2012 at 2:07pm
Hi Robert,

That sounds just about what I'm going through. Alot of questions pops up. When I saw Dr. Burgin he said a slight narrowing. When I saw Dr. Khan (Neurosurgeon) he said it was an extreme narrowing. It's conflicting. All I get is do this test... and we'll follow up to see what you need to do next time. Jill from Stanford was basically my rock right now. But please let me know how it all goes when you go to Boston.

Title: Re: Want to meet other MM'ers?
Post by hrsridermom on Oct 24th, 2012 at 4:36pm
Arainne, Destin and I will be at USF Health tomorrow afternoon to see Dr. Rose (her neuro) Have you heard anything from Dr. Steinberg?

Donna

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 24th, 2012 at 4:46pm
I spoke to a lady name Jill at his office. Just waiting for Lakeland Regional Hospital, USF, and Tampa General Hospital to send the film and my charts to them. She was really nice and helpful. She knew you and destin too!

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 24th, 2012 at 4:47pm
Oh... and how is everything going with you and Destin by the way?

Title: Re: Want to meet other MM'ers?
Post by Robert on Oct 26th, 2012 at 6:34pm
Wednesday I got a package sent to Boston with the CD of the MRIs, talked to Dr Thursday and he said he would probably get a chance to look at them Tuesday so would hear back middle to end of next week.

Talked to Jill Wednesday also sent a package to them also then found out the CD didn't have the 2012 MRI so sent out another Thursday morning probably won't hear back for an extra week because of the CD mess up.

Hopefully next week will hear back from OU children's with there results on all tests. And there recommendation.

That's all for this week, should be plenty of news next week.

Robert-

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Oct 29th, 2012 at 10:00am
Robert just went through the same thing. I had the MRI/MRA but not the CT as well on the disc. So now I have to go back to the hospital and get this information.

Title: Re: Want to meet other MM'ers?
Post by Amit on Oct 29th, 2012 at 5:28pm
Robert,
Looks like Benjamin has already suffered for 7 years.. Our 5 month old had a stroke and we were told to wait till he reaches 1 year of age.. However, Dr. Scott from Boston Childrens was not to keen on waiting..
1. MM is progessive,  no one can predit the rate at which the disease is progressing and it is better to get the surgery done at the earlist possible.
2. Dr. Scott thought that having a second stroke would have been devastating..  which we as parents totall agreed (we see the impact of the first stroke already) 
3. I would suggest, now that you know its MM, its better to be treated for it at the earliest, rather than wait.. School, college eduction, in general everything can wait and should wait over any health issue. But thats just me..  Good luck with everything..

My 2 cents..

Title: Re: Want to meet other MM'ers?
Post by Amit on Oct 29th, 2012 at 5:33pm
Sorry, did not see the updates before responding.. Looks like you are on the right track..

Good luck with everything..

Title: Re: Want to meet other MM'ers?
Post by hrsridermom on Oct 30th, 2012 at 9:04am
Hi Arianne, just saw your post.  We met Jill in Kansas city last summer.  Her daughter has MM. Haven't met her yet...she was busy with colege...but I do look forward to meeting her someday.

Destin is scheduled for a CTA on 10/9 to see how her left side is doing.  She's having a lot more tingling in her face and hands.  Could be college life or it could be MM...we just want to make sure it's not serious at this point.

Title: Re: Want to meet other MM'ers?
Post by Robert on Nov 8th, 2012 at 8:19am
So, this is where we are as of today. I called OU Children's yesterday to talk to the Nurse, and found out that all the results were in and they came back negative.... what that means I have no idea, I am not super happy with the lack of importance put on this from their side. The nurse said that we will just continue with our scheduled appt in Jan 2013.

By now both Boston and Stanford should have received the packages sent them for review. I have sent the $350 to Boston to cover their charges for the 2nd opinion and thats where I am. I will call and email Jill at Stanford today to follow up with her.

So, all else being status quo we will be driving to Gulf Shores Alabama for Thanksgiving vacation!!!

I will update here if I hear from Stanford or Boston.

Sincerely, Robert

Title: Re: Want to meet other MM'ers?
Post by Arianne120 on Nov 8th, 2012 at 8:44am
Robert thanks for the update. I know it feels like everyone is taking their time with the necessary steps to take care of this. But, please let me know if you hear from them. Right now, My angiogram has been put off since my husband and I found out I was pregnant on his birthday :). It's scary because now, I dont' know if I did need the surgery. But my neurosergeon didn't think anything of it. Didn't even say anything about rescheduling a time for me to talk to him. I feel like I'm kind of put on the side. Hope you guys have a wonderful thanksgiving.

Title: Re: Want to meet other MM'ers?
Post by hrsridermom on Nov 9th, 2012 at 7:33am
Robert have a good time in Gulf Shores.  Keep us posted when you hear from Dr. Steinberg. 

Arianne, didn't you say you had a stroke with your last baby? Have you sent your results to
Dr. Steinberg?  I'm sorry but it seems to me your doctor should be taking this more seriously. Congrats on the news but please take care!  Destin is going to have a CTA done today but we won't see her doctor until 11/27.  I don't think hers istuation is urgent so I'm not worried about waiting until then.

Title: Re: Want to meet other MM'ers?
Post by tjedwards55 on Apr 28th, 2014 at 9:37am
hello. my 38 yr old husband just recently found out he has MM. We are from the KC MO area. We have a surgery date for this week.

Title: Re: Want to meet other MM'ers?
Post by gotchlorine on Apr 28th, 2014 at 2:07pm
Wishing you and your husband all the best as he has surgery this week!

There is a community of moyamoya patients in your area. They are planning a get-together in Missouri for 5/10 (to celebrate/recognize World Moyamoya Day). It may be too close to his surgery date, but if you are on Facebook, and go to the World Moyamoya Day - May 6th page, you can keep up with future gatherings.

Please let us know how he is doing!

Warmly,
Jill

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